The conversation went like this:
Me: She’s doing really good about getting off to school. We’ve been making it to school on time for the past week and a half. I think we’ve turned a corner.
My Daughter’s Consular: Don’t be shocked if she cycles, have you heard of that? They sometimes regress.
Me: No, never heard of it. As of now, she seems fine with going to school.
My Daughter’s Consular: Hopefully that continues, yet autistics do cycle, they seem fine, but then a trigger happens and they regress back. Sometimes it feels like one step forward, two steps back.
Wow. Was she ever right. I had never heard of “Cycles”. I wasn’t prepared for what that entailed. One reason I had never heard of cycles is that many call it by another name. Meltdown. Some autistics have bad ones, sensory overloads that tax their brains so hard that the only recourse is to ‘throw a fit’ and shut down for a ‘reboot’. It can be terrifying for all involved. The parents, friends, other family member, and especially for the autistic person themselves.
Yet, autism, being that wicked little tailor it is, never does the same thing to each person it afflicts. Some may meltdown, others may shutdown. Still others, like Alexis, require a restart. She has to go to a start point, then work her way out of it. She rarely cries, or screams, never have I seen her throw herself on the floor or hurt herself. We’re lucky in that respect. Yet when she restarts, we are usually confused. What caused this behavior? She was doing just fine, but why now?
Give me a moment to talk about myself.
I got a new phone. A Samsung Galaxy Note8. Pretty sweet huh? Yeah, it’s not an S9, but hey, new phone.
It sucks. Damn thing has been nothing but problems since I got it 12 days ago. Tried to take it back today to be told it was just me. It’s not me. I may not be the most savvy person when it comes to ‘Smart Phones’ but still. The thing is annoying as hell. Totally froze on me today. So I went back to the store to trade it.
I waited a bit. I was pissed, angry, using words that with ‘uck’ a lot. So angry I entertained the thought of using my 3 lbs sledge to solve the problem. However, that wouldn’t solve the problem. I went outside, smoked a cigarette (yes I know) and did my best to calm down. Worked the problem out in my head. Knew what I was going to say, and then, once composed, I went to the phone store.
Came back with my phone. Told politely it was me, not the phone. It’s the phone, but hey, I can calmly work it out. I have been considering the beer in the fridge. But instead, have a diet soda, and my laptop to ‘ignore’ the problem. Because if I do ignore it? A solution will come. Usually does. It’s how I restart.
Back to the kid.
So okay, stressful day. I got upset, very upset, but I resolved the problem. Took me a good hour. The darn phone has been bugging me for a week and a half. Yet it took today to get my goat. And that lasted about an hour. Phone is still in one piece. Alexis, however, has taken all day to get over yesterday.
She had a school conference.
Now, in modern American Schools, they have come up with this fantastic idea called “Student Lead Conferences”. Which means, you can do four conferences at once. Which means, Alexis had to speak to her parents about her school work…which she is struggling with… as three other kids talked to their parents. A noisy, distracting, environment.
The conference went okay, she mimed what she did. Didn’t speak to us. Her very sweet and helpful teacher was shocked by all this. In class, Alexis’ practiced this, she did well. But now? Nope, silence, the Cycle had geared up.
Now by geared up, I mean geared up. Not begun, because the cycle had started before this. A good five days before when the reality of the conference was looming in the future. I should have caught on, but I didn’t. Hindsight of course, helps. It was that flipping idiom that should have been the key.
Idioms can be tricky with many autistics. So can sarcasm. I use both constantly, which is hit and miss with Alexis. She actually likes idioms. Yet the other day, when she wanted to change clothes to eat breakfast, then change again for school. I suggested she change into her school clothes and eat. That way she’ll be ready, and just be careful eating. I put it like this. “That way, you can kill two birds with one stone”.
Why? For heaven’s sake, would she want to kill a bird? Birds are nice.
She was serious. She couldn’t understand why I wanted her to go pick up a rock and throw it at the birds outside our house. I was puzzled, because I had used other idioms, similar to this one, that she had no problem with, yet that day? Well it was taken literally.
It was the beginning of the cycle. She was nervous about the conference and the idiom was lost to her. She can get idioms, metaphors, jocular tales and most jokes. Yet when she starts to cycle up, things get fuzzy quick. Taking things literally is her fall back, her safe mode.
It was today, the day after the conference, that Alexis didn’t go to school. It was just too much for her to process. We tried to work on Math, a subject she has a bizarre relationship with. She is either very good at it, or very bad. I can’t tell, neither can anyone else. Math has become part of her ‘Fuse Box’. Or maybe it’s better to call it her ‘Tool Kit’. She will purposely get answers wrong, will whine about doing problems as we sit and do homework. Yet in play, she will answer questions without hesitation. Solve problems like they are a hot knife through butter.
Today? Adding 6+6 was too difficult. She couldn’t do it. Let alone multiply two digit numbers by another set of two digit numbers. Even with the aid of a calculator, she couldn’t do it.
This is the damnation of an Autistic Cycle. Things you know become lost to you. Simple task become beyond complex. The world comes crashing down and even 1+3 is impossible to answer. It’s not a game, not a joke, it’s real. Then her brain just shut down today. Trying its best to do a restart, after a day of high anxiety, and make sense of it all.
While my emotions ran high over my phone problems, I was able to find a way to calm down. To solve the problem in my mind and move forward. What an utter hell it would have been if I had been unable to do so. I can’t even fathom how that would be.
Try being a prisoner to your emotions, locked inside you, all there, all working but unable to translate them. It would be like waking up tomorrow and suddenly speaking a foreign tongue, without knowing it. How would you tell anyone the simplest of things? How would you even begin to ask for help?
The autistic cycles are a living hell for the sufferers, and just as frustrating to those who are around them. Peace and quiet, a relaxing hobby, no pressure and the cycle completes itself. Yet honestly? I’m not sure it is over. I have no idea if I will be able to get her off to school tomorrow. If she will go, or if she will refuse.
I have come to the point where I don’t take it personally, that I am not a bad parent, that I don’t just let her ‘get away with it’ As some seem to think. Yet I have to be careful she doesn’t use this as a manipulate tool to skip out on her education. Deciphering the difference isn’t easy. Her need to avoid over stimulation does sometimes manifest itself in manipulative behavior. But, can you blame her? I don’t. I wouldn’t want to do something that would cause me anxiety at the level she feels.
So I ride a fine line, every in search of the Rabbit Hole she is hiding in. Doing my best to be on guard for the next cycle, the next trigger, and react properly so I can lessen the impact. It’s not easy, and I am not alone in this. And I am certain no expert. I hadn’t even heard of cycles till last week.
My hope is one day she will realize the trigger, learn to minimize them, control them instead of having them control her. Find solutions, a bag of tricks, to make her life easier. One day, I hope she can deal with a stressful situation that won’t push her into a cycle. That she find an out. Till then, I have a lot to learn, and teach to her, when she is ready.